So Close Yet So Far Away

When it was time for Amanda’s second round of morning meds, she commented on the number of pills with the added oral diuretics. Fifteen, not counting the five rejection meds she takes at 5 am. The charge nurse was our nurse today. I’d planned on just skipping asking our nurse for a wheelchair to go to Methodist in. I didn’t have to since he was our nurse, though. I told him we’d be going over there and needed a wheelchair, and he said we’ll see. I quickly spouted off, saying well, we’re going. Jokingly, I said there was an abandoned wheelchair in the basement I’d seen the last few days, and I’d steal it if I had to! 

The Methodist coordinator called and told us that the transfer was still pending. Amanda said no, it was on hold because of their six-month rule. She wanted to cancel the apportionment, but Amanda explained we wanted to keep it. She called back later and asked if Amanda was still inpatient. There was a lot of talk about the doctor who worked at both and initially pushed for the transfer. I think there was a misunderstanding about who Amanda’s cardiologist was. She said she’d talked to her manager and call back. I was mad, telling her to make sure they didn’t cancel the appointment. Amanda was frustrated and asked if I wanted to talk to her; I answered with a resounding yes. When she called back, Amanda started talking to her and put her on speakerphone. After talking to her manager, they wanted to present things to the pre-transplant board on Friday and get everything lined up better. Also, since we were inpatient, we couldn’t see them since the insurance wouldn’t approve anything with her being inpatient.

It was pretty frustrating that we’d been waiting for three weeks for this appointment. I was holding off working, too, since we were going today. I pondered out the window, looking at Methodist next door, thinking it was just right here and that it wouldn’t take any time to get there, so close yet so far away. In the grand scheme of things, it would be better that they’re more prepared for us than just dropping in and trying to explain everything. The manager was on the call with the coordinator and wanted to know what unit we were in so she could get all the current records faxed over, as well. I hope it’s not another three weeks before we can see them. I was probably just a little extra mad because I wore a button-up shirt today to look spiffy for our outing! 

Amanda’s weight was stable today; total loss since this admission was almost 30 pounds during this hospitalization. It kind of reminds me of our other pre-transplant days, the symptoms of heart failure. Amanda seems a little worried since her output has slowed down a bit. We have a little wiggle room to add the Metolazone if she starts going in the wrong direction, though. We had the lady cardiologist rounding with her entourage, only one of whom I recognized. They seemed to know nothing about the Methodist transfer, and we didn’t bother mentioning it since we weren’t going anyway. As per her, the plan was to get us out of here in a day or two; it couldn’t come any sooner. 

Later on, they added a blood pressure medication to bring her BP up. They didn’t speak to us about it at all. This med was tried a couple of months ago but caused issues with her heart rate and made the chest pain worse. Amanda’s BP is always soft; they would know that if they’d have bothered to check her record or just asked us before ordering a new medication right before we were supposed to get discharged. We run into these issues with the rounding team approach versus working with our doctor alone.

Amanda was disappointed with the appointment cancelation and was despondent about it for a while. I knew we’d need emotional support fries today, so I got Chic-fil-A for lunch. Either way, we had a discharge to look forward to in a day or two. Returning from getting lunch at Children’s, I saw an apparently lost mother with her three girls. As I walked by, I asked, “St. Luke’s?” She said yes, and I told her, follow me! I often randomly offer directions to those that are obviously lost. 

Amanda transitioned to having her heparin shots in her arms instead of her belly since she now has the Furoscix there. Her arms look terrible and are all bruised up from each shot. When the nurse went to give her the shot amongst all the bruises, I joked with Amanda that she better not go to the post office. When she was on heavy blood thinners before the transplant, she would bruise easily. While at our local post office, the lady helping her asked if she was okay referring to the bruises, thinking they were from abuse! It was good she was looking out for her, but it still gave us a chuckle.

I emailed Carley, our favorite PA, after we heard the news from Methodist this morning. I told her we needed to see Dr. Nair and speak with him about our options. She passed along the request and was hopeful he’d swing by today sometime. The inpatient coordinator came by as well. We told her about Vanderbilt’s requirements and Methodist not wanting to see us. She seemed to take the about as hard as we did, saying geez! I said I’d emailed Carley about how we wanted to speak with Dr. Nair to go over our options. She said it is most definitely up to y’all where you go. I mentioned how I wanted to go to Vanderbilt to at least get their approval and have it in our back pocket while we went with Methodist. She seemed to think that was a good idea.

I had Sybil lined up to take Tank out and feed him since I didn’t know how long things would be with the appointment. I thought it might take a while and didn’t want to be scrambling to get back to let him out. I stayed with Amanda the entire day since I already had her lined up. We had Mexican food for dinner from a place we’d eaten at before. It is what I call white people Mexican food! We typically get salads there and did today, but we also each got a kid’s cheese enchilada plate that was meh. We’re spoilt being on the border, but we even have better Mexican food at different border towns, too. A good restaurant will have multiple salsas. I like the really hot stuff, and if you’re in the know, you know which ones to ask for the authentic spicy salsa that is rarely delivered to a light-skinned table without prompting!

There is a PCA who always calls Amanda “friend.” She is working on the even number side of the floor, so we don’t have her tonight. She thought we were gone but saw me coming in with dinner, so she stopped by to say hi. She is super sweet but is leaving. She had just had an interview with MD Anderson that went well, and she will be working in an OR there. She just unloaded all the things happening with work she didn’t like and her personal life while in for a visit. Amanda is like my mother in that regard; she attracts people like that, ones who will just spill their wows and life stories at the drop of a hat. I guess she just makes people feel comfortable.

With all that we’ve had going on with closed door after closed door, I think doing a card dump might be a good idea. It would be nice for her to have a bunch of cards of encouragement and support when we get to the apartment or if we are still stuck here. If you’d like to send a card, our address is 2825 Bellefontaine St, 128A, Houston, TX 77025